Tag Archives: things which suck

The Most Important Person To Trust

Published / by Kim

In a recent post about my upcoming surgery, I mentioned how much I trust Dr. Firm Handshake. Having a doctor you trust – whether it’s an oncologist, a general practitioner, or a foot doctor – is a key part in developing a health care partnership with the people you depend on to keep or make you well. As I was laying in bed this morning trying to will myself to get up, it occurred to me that trust in someone else is much more important even than trust in your doctor, and that’s trust in yourself.

A large part of the reason this tumor was able to grow to record size* was that I didn’t trust myself. I knew something was wrong. I knew for many months. Some of you who follow me on Twitter may recall that last summer I was researching – with Dr. Google, of course – what surgical abdominal scar tissue might feel like and what sorts of problems it might cause. When I couldn’t attribute the weird feeling of separateness in my belly to scar tissue, I decided it must just be bloating and blew it off. As if I don’t know how bloating really feels.

With my scar tissue theory thrown out for lack of evidence, I knew what the problem had to be. Deep inside I knew it, but I kept denying that there was a problem. Why? Because I didn’t want to be a bother. I didn’t want to be wrong. I didn’t want to go take up a doctor’s time and find out there was nothing wrong with me and look foolish. Even though I went through this three times before and knew there was a problem I didn’t trust myself, my own knowledge, or my instincts.

I think a large part of the reason I didn’t listen to what I knew inside was that it’s been driven home by the medical community so many times that we, as patients, shouldn’t trust ourselves. Oh, sure, the literature will tell you that you should, but experiences with individual doctors says otherwise. Here’s an example: Right around the time Scott and I got married, my thyroid went entirely out of control. My heart sometimes tried to beat out of my chest, I couldn’t hold out my hands without them shaking, I was ravenously hungry all the time. I had classic symptoms of hyperthyroid, as well as some not so classic but documented symptoms. One of those was hives, which is how I was diagnosed, because I went to the doctor for hives and he noticed the palsy in my hands. Following my diagnosis, there followed a short period where I was in and out of the doctor’s office with a long list of strange complaints while my endocrinologist tried to get my medication dosage correct. One of the complaints was shooting pains in my arms. The doctor I saw for that looked at my chart, saw that I was being treated for a hyperthyroid disorder, ignored that, and told me I had weak arms and needed physical therapy.

My endocrinologist later told me that shooting pain in the limbs is often a sign of hyperthyroid problems. The other doctor just dismissed my concerns, my experience, and my medical records. He knew best and that was that.

That gave me a big lesson in not always trusting what one doctor says and instead asking another. It was also when I began to realize that I was my most important health advocate. Infertility further drove that home for me. And yet, after all of that, and after three bouts with this disease, I still didn’t trust myself enough to go see Dr. Firm Handshake right away. When Scott and I were sitting in his office to get the results of the CT scan and Dr. Firm Handshake led with, “Well, I have good news**…” I still expected him to say he didn’t see anything wrong with me.

Even though I’ve been in discomfort since August and pain since December. Even though my belly is so big that twice I splayed my fingers over it on a crowded subway train and guys leapt up to give me their seats***. Even though I knew something was wrong, I still expected him to say it was all in my head. That’s sick, right?

So what I’m saying here is this: if you think there’s something wrong, for gods’ sake, so get yourself checked out. Trust the little voice inside you telling you there’s a problem. You know you better than anyone. And if you know something is wrong and go to a doctor who says it’s not, go to another one. We all need to take charge of our own health and make sure we get the care we need and deserve.

* Record size for me. I’m aware there are far larger tumors out there.

** Yes, he really did lead with news of a 28cm tumor with “I have good news.” In a way, it is good news, because it’s one big mass instead of several smaller ones. That makes it less likely to be invasive, so that’s good news.

*** Yes, I did that on purpose. I’m not proud. I wanted to sit. I may as well get SOME perks out of this.

Kim and the Sort of Crappy But Much Better Day

Published / by Kim

First off, Scott’s mother is not in a medically induced coma, as it turns out. The information we’ve been getting from family members on the scene has been altered as people put their own take on it and as a certain family member spins it to cause the most feelings of guilt in those who aren’t there. Scott’s brother arrives in Pittsburgh today, so I expect to start getting more accurate information. Or at least less altered information.

We going to drive out on Thursday or Friday now, depending on what his brother says when we speak to him later today.

Second, the shared SSL thing at my Web host has been resolved. I woke up to find an email apologizing for the way it was handled and the news that they renewed the shared SSL certificate for another year. So now I still have to set up a few clients with their own SSL certs, but we have time to do it correctly instead of making it a mad scramble because the sites are down without it.

Third, one of the sites that was going down, which was why all those sites got moved to another server, went down again today. But the good news is that the other sites did not go down with it, and also it seemed to resolve on its own without having to reset IIS. Hopefully that was just an isolated incident, but I’m keeping a close eye on things.

All in all, today is a much better day. A little bad, but mostly it doesn’t suck as thoroughly as yesterday. There’s hope for everything.

The Saga of the Wound Vac, Part 2 (and a pathology update)

Published / by Kim / 3 Comments on The Saga of the Wound Vac, Part 2 (and a pathology update)

I know, I know. I’ve been a bag blogger. And a bad ABC-alonger. I fell behind at B this year. That has to be a record. I plan to catch up this weekend.

For now, I have more about the wound vac to talk about. I talk about the wound vac a lot, unfortunately, because my life is pretty much consumed by this thing these days. The wound is much, much smaller now. It’s only (only, ha!) about 2 inches long, an inch wide, and a little under an inch deep. With its smaller size, however, have come a raft of problems.

The most pressing problem – to me, anyway – is that the foam has begun to smell. A really horrible smell. My nurse thinks it smells like cigarette smoke, which I think is crazy because it clearly smells like shit. Literally. When I first began smelling it, I was constantly checking the litterbox to see if it needed cleaning and it was usually fine.

The first time it happened, the nurse and I were really worried that there was an infection. But when she took the dressing off and cleaned the wound, the wound didn’t smell. We eventually deduced that it was the foam that had the smell, not the wound. The nurse from the wound vac company (KCI) was here today and the first thing I brought up was the smell. She told me that it’s normal. Normal! She said that when the foam touches the drainage, it smells. So basically, live with it. Which is diffcult, because it makes me nauseous. I started piling on more tape to hold the smell in,which she says is fine, but it always seems to break through.

Now I’m even more reluctant to leave the house. As if having a tube attached to my body, coming out of my pants no less, with blood flowing through it wasn’t bad enough, now I’m constantly wreathed with the smell of shit. Attractive, right?

The second problem is that the pressure on the machine has been constantly fluctuating. This was a problem in the beginning, but we tracked it down to the nurse not making the hole in the plastic large enough before putting on the tube, so it was fine for a while. It’s possible that this new fluctuation problem has been due to too much foam being put in. With the KCI nurse looking on today and giving direction, my nurse used half the foam she normally does. So hopefully that will solve that.

Today we also changed the pressure from 125 to 150. (I’m not sure what units those are.) Also, we changed it from continues pressure to intermittant pressure. That means it goes on for 2 minutes, then off for a while, then back on for 2 minutes. This sucks – ha ha! I’m so funny! You get it? Sucks? Sucks? You get it? – because every time it turns on, it hurts. So I was shown how to change it back to continuous if I can’t take the intermittant anymore.

Hopefully, it’s only 2 more weeks with the wound vac. If it’s more than that, I may go insane.

There’s good news on the pathology report, though. It turns out that the pathologist was just being super descriptive. The tumors didn’t change into a form more likely to turn invasive. So hurray for that. Treatment remains the same, which is basically no treatment. Just vigilance and more surgery if they come back again.

The Saga of the Wound Vac

Published / by Kim / 3 Comments on The Saga of the Wound Vac

This thing is the most temperamental piece of machinery I’ve ever met in my life, and that includes a few of the computers I’ve had over the years, which is saying a lot.

Let me explain how it works, because I’m sure a lot of you playing along at home are having a hard time picturing this thing. I know I did before I saw it.

So I have this great big open wound in my abdomen that needs to heal from the inside out. Conventional treatment for a wound like this is a wet-to-dry dressing, which consists of gauze moistened with saline packed into the wound and topped off with dry gauze. The wound vac works somewhat similar, except that instead of putting wet gauze into the wound, the wound is filled with a piece of special foam. The foam comes in large sheets which are cut to the size of the wound. For some wounds, like mine, the nurse may need to cut more than one piece of foam and put them together in the wound like a gross game of Tetris. Once the foam is in the wound, it’s held in place with what the wound vac company calls “drape.” The drape is just a special sheet of clear plastic that goes completely over the foam and the surrounding skin to form an airtight seal.

Once the drape is in place, you need to cut a hole in the drape over the foam. The size of this hole is, as we have discovered, extremely important. Anything smaller than a quarter and all hell breaks loose. Tubing is attached over the hole, then the other end of the tubing is attached to a canister in the wound vac machine. When the machine is turned on, all the air is sucked out of the foam and the wound, providing constant negative pressure. Any fluid that accumulates in the wound is sucked out through the foam into the tubing and eventually ends up in the collection canister. There’s a special little packet of something inside the canister that breaks open when fluid hits it and turns the fluid into a solid gel. The end result looks like cherry Jell-O. It’s disgusting. I don’t think I’ll have have room for Jell-O again.

The beauty of this system is that the constant negative pressure encourages blood flow to the wound, which helps healing. Constantly sucking out the fluids keeps the wound clean and prevents infection. It also promotes granulation, which is something I have no idea what it is, but everyone tells me it’s desirable. Wounds heal considerably faster with the vac and the scar is smaller. It’s a great invention.

When it’s working.

And therein lies the problem, because it’s really fucking persnickety. We found out about the too small hole issue first hand, when the machine stopped working suddenly. We had to get our nurse out here to remove just 24 hours after it was put on, because it wasn’t working. Apparently, it can’t stay on in a non-working mode for more than 2 hours, or bad things can happen. I don’t know what those bad things are – infection? damage to the tissue? –  but I’ll take their word on it. So it was an emergency situation to get her here quickly. She replaced the vac dressing, only to have the same thing the next night, at which point we had to have the on call night nurse come over and put on a wet-to-dry dressing.

All of this is bad for the wound, because the vac foam dressing is meant to stay in place for at least 48 hours. Pulling it out before than can disrupt the wound’s healing, so this is a problem. Because of this, we asked our nurse to have a nurse from KCI – the company that makes the wound vac – come with her to put the vac on. The KCI nurse confirmed that my nurse was doing everything right, except the size of the hole. So we started making sure the hole was at least the size of a quarter and things seemed fine.

Cut to last Sunday night. I saw what looked like a dark blood clot blocking the beginning of the tube, right at the foam. The clot stayed there, with nothing being drawn from the wound. A little while later, the machine started to have pressure fluctuations and eventually the blockage warning started beeping. Another visit from the emergency on call nurse followed, resulting in a wet-to-dry dressing being put on. This time wasn’t as bad, since it was at least 48 hours since the vac had been put on, but it wasn’t good for my state of mind. I need to prepare for these dressing changes mentally, because pulling out the foam hurts like a bitch, so doing it when I’m not expecting it to be done really sucks.

Lois, our regular nurse, came back on Monday and put the vac back on. Everything seemed fine until a few hours ago, when the “canister full” alert started beeping. That canister wasn’t anywhere near full, but we changed it anyway. A little later, the blockage alert warning beeped. Turned out there was a kink in the canister tubing, causing a blockage. This caused there to be no vacuum pressure while we sorted it out, and I’m pretty certain the foam shifted during that time. Now, the pressure is fluctuating once in a while, and a sort of leaking noise can be heard now and again from where the tubing meets the foam.

For now, the pressure seems to be staying up and there’s still fluid being sucked out, so I’m hoping it stays this way until tomorrow morning when Lois comes to change the dressing. If the fluctuating gets worse and the leaking sound gets worse, it will mean another emergency visit from an on call nurse.

So this is why I have a love/hate relationship with this machine. The wound is healing so well with it, but it so often isn’t working. Not to mention, I’m constantly tethered to it, which sucks. It’s embarrassing, too. I don’t like to go outside with it, because you can see the tubing with the yuck flowing through it.

They tell me it will be all healed in about a week-and-a-half, which I hope is true.